Transition Readiness of Adolescent and Young Adult Survivors of Childhood Cancer

描述（由申请人提供）：在患有慢性疾病的年轻人中，一个关键但尚未得到充分研究的方面是成功过渡到成人医疗保健。由于几乎80%的儿童癌症患者被治愈，儿童癌症幸存者的护理转变变得越来越重要，但大多数儿童将经历至少一种疾病或与治疗相关的发病率。大多数儿童癌症的成年幸存者没有接受推荐的癌症相关随访护理或筛查潜在的长期危及生命的健康后果，这些后果随着年龄的增长而增加。共识声明强调了对患有慢性疾病的青年过渡到成人护理的重要性，并提供了建议。然而，对于如何最好地评估一个人何时或是否准备好过渡到成人医疗护理，目前还没有明确的循证指南。虽然已经制定了过渡检查清单，以评估疾病知识和技能，作为过渡准备情况的标志，但这些措施没有解决过渡过程的发展、心理社会和系统复杂性，也没有从所有利益攸关方（即患者、父母、提供者）的角度评估过渡准备情况。为了解决这一限制，我们的多学科团队开发了AYA幸存者的过渡准备模型- AYA过渡准备的社会生态模型（SMART）。本研究的目的是使用混合方法（定性和定量）来完善SMART，并开发一种内容有效的工具，用于衡量青少年和年轻人（AYA）儿童癌症幸存者的过渡准备-过渡准备量表(TRI)-这将测量SMART的组成部分。TRI评估将是多信息来源的，为患者、家长和提供者（PPP）创建三个版本。PPP焦点小组将引出关于AYA幸存者过渡准备的多种观点，并将为SMART修改提供信息（目标1）。通过项目开发的迭代过程，以及对来自费城儿童医院（CHOP）和非CHOP PPP的PPP进行定性数据收集和分析（内容效度评级、认知思考访谈），将开发PPP的三个TRI版本（目标2）。最后，一项以临床为基础的试点研究（N=50 PPP三元组）将测试tri的初始心理测量学和多信息在线数据收集的可行性（目标3）。美国国立卫生研究院的患者报告结果测量信息系统（promise -一项美国国立卫生研究院路线图倡议）将通过采用他们的测量开发程序，使用他们的在线数据捕获系统，以及对PROMIS项目的管理来帮助评估TRI的并发有效性，从而通知研究的方法。当前项目完成后的长期项目研究目标是对TRI进行大规模验证研究，并将研究结果转化为干预措施和循证指南，以促进AYA幸存者向成人护理的过渡。这些目标与PA 09-130，癌症控制行为研究探索性资助，以及NCI致力于改善AYA幸存者的健康结果和护理过渡的承诺是一致的。

DESCRIPTION (provided by applicant): A critical, yet understudied, aspect in young people with chronic health conditions is successful transition to adult medical care. This care transition in childhood cancer survivorship has become increasingly important as almost 80% of children with cancer are cured, but most will experience at least one disease or treatment- related morbidity. The majority of adult survivors of childhood cancer do not receive recommended cancer- related follow-up care or screening for potential long-term life-threatening health consequences that increase with age. Consensus statements have emphasized the importance of, and provided recommendations for, transition to adult care for youth with chronic illness. Yet, no clear evidence-based guidelines exist for how best to assess when, or if, an individual is prepared to transition to adult medical care. While transition checklists have been developed that assess disease knowledge and skills as markers of transition readiness, these measures do not address the developmental, psychosocial, and systemic complexities of the transition process, nor do they assess transition readiness from all stakeholders' (i.e., patients, parents, providers) perspectives. To address this limitation, our multidisciplinary team developed a model of transition readiness for AYA survivors-the Socio-ecological Model of AYA Readiness for Transition (SMART). The aims of the study are to use mixed methods (qualitative and quantitative) to refine SMART and develop a content valid instrument of transition readiness of adolescent and young adult (AYA) survivors of childhood cancer-the Transition Readiness Inventory (TRI)-that will measure SMART components. TRI assessment will be multi- informant, with three versions created for patients, parents, and providers (PPP). Focus groups with PPP will elicit multiple perspectives on AYA survivor transition readiness and will inform SMART modifications (Aim 1). Through an iterative process of item development, and qualitative data collection and analysis (content validity ratings, cognitive think aloud interviews) with PPP from The Children's Hospital of Philadelphia (CHOP) and non CHOP PPP, three TRI versions for PPP will be developed (Aim 2). Finally, a clinic-based pilot study (N=50 PPP triads) will test the initial psychometrics of the TRIs and the feasibility of multi-informant on-line data collection (Aim 3). NIH's Patient-Reported Outcomes Measurement Information System (PROMIS-an NIH roadmap initiative) will inform the methods of the study via adoption of their measurement development procedures, use of their on-line data capture system, and the administration of PROMIS items to contribute to the assessment of the concurrent validity of TRI. The long-term programmatic research aims following completion of the current project are to conduct a large-scale validation study of TRI and to translate findings to inform interventions and evidence-based guidelines to facilitate transition to adult care of AYA survivors. These goals are consistent with PA 09-130, Exploratory Grants for Behavioral Research in Cancer Control, and the NCI's commitment to enhancing health outcomes and care transitions of AYA survivors. PUBLIC HEALTH RELEVANCE: Addressing the challenge of transition to adult medical care for youth with chronic health conditions, including cancer, has been highlighted at a national level (e.g., National Cancer Institute and LIVESTRONG joint report, 2006; Healthy People 2010 and 2020; congressional bill H.R. 2109; multiple medical organization consensus statements). Studying transition to adult medical care for adolescent and young adult survivors of childhood cancer is especially important given: (1) the number of childhood cancer survivors in the U.S. is approaching 300,000 and increasing, (2) the high prevalence or risk for significant long-term cancer-related morbidities, and (3) the fact that most adult survivors do not seek recommended cancer-related medical care. Thus, the proposed project has significant public health implications for advancing the study of transition in childhood cancer survivorship and other conditions to ultimately improve disease management and continuity of care.